Daughter thinks she wet her bed

[lsad765]

HI all --

 

I'd appreciate your opinion on my daughter's behavior at night. For the past three nights, my daughter has been waking up thinking that she has wet her bed, but when we check, she did not wet her bed and is completely dry. She has never done this before. One of my daughter's OCD symptoms in the past has been that she feels wet after using the toilet and wipes obsessively or tantrums because she wants to change her pants because she says they are wet even when they are not.

 

My daughter was just swabbed for strep a couple of days ago, and it was negative. Her little sister recently had mild Coxsackie, but my DD never had any symptoms of getting it herself.

 

Does anyone think this could be a new OCD symptom signaling a new illness (perhaps a virus?) I don't know if there is anything I can do to help. She is already on Cefdnir, although she got strep once already on Cefdnir. Perhaps we should switch back to Azithromycin, which she was on for 5 days after she got the strep (this was prescribed through her pediatrician). Her doctor is Dr. T but I know he is very busy and otherwise occupied. I can try to reach him for advice, but I don't know if he will be available to respond. Unfortunately, our primary pediatrician is not helpful for the PANDAS stuff, only for straight strep (I'm looking for a new ped).

 

I also wonder if I should try acyclovir, which Dr. T prescribed but we haven't tried yet because the Cefdnir originally seemed to be helping before she got strep while on it, and Dr. T suggested we wait. Can you take acyclovir and abx at the same time? Is that safe and is it a a good idea or will it then not be clear to us what is helping...? I guess I should really check in with Dr. T about all this too.

 

Still, I would appreciate the input of seasoned experts like those of you on this board in the meantime. This is still new to me -- she was diagnosed a little over a month ago, and I'm quickly learning that little is clear cut when it comes to PANDAS/PANS.

 

Thank you in advance....

[LNN]

This was one of my DDs issues as well. Didn't wake up at night but during the day would wipe obsessively or need to change her underwear, insisting it was wet when it was dry. I think it was partly OCD, partly sensory. We were somewhat successful using ERP therapy, asking her to delay changing her underwear or distracting her for a bit before she gave in. We also put cornstarch in her underwear to absorb any feeling of moisture that happened just from natural sweat. This helped a lot. At times, like in the mornings before having to leave the house, we'd put a panty liner in her underwear (trimmed down to size). This was thin and unobtrusive but gave her that sense of security that "if" she leaked, it would be ok. (she of course never did because she wasn't really wetting. But it calmed her down and got us out the door).

 

My DD never had strep either. Titers were always normal, she never swabbed or cultrued positive for strep. She may have had sinus or ear infections, or she may have had lyme - her tests were indeterminate. We use a blood test called C3d - which measures how activated her immune compliment is - it doesn't tell us what sort of infection she has, but it does tell us whether her behaviors correlate to some type of immune mardi gras. At her worst, her C3d was 93 (at the time, anything above 8 was considered high). The labs have raised the level of "normal" up to 20 now - not sure I believe that. But regardless, after treating her for 8 months for bartonella with 2 abx and keeping her on a pulsed prohpylactic dose of azithromycin (4 times/wk), her C3d is now below 20 for the first time in 3 years. We also treated her for a methylation problem that made huge improvements in her bipolar swings and irrational, PMS-y meltdowns. She's in a really, really good place now.

 

So I don't know if chasing strep will bring relief or not. Motrin always helped calm my DD down. Long term abx helped lower the load on her immune system. But the behavioral piece didn't resolve until we addressed methylation.

[LexMom]

My son also had this problem. I believe it was during the time when he had a UTI. He actually started wetting himself afterwards. It seemed to clear up after his infection was gone.

Edited February 18, 2013 by LexMom

[lsad765]

My son also had this problem. I believe it was during the time when he had a UTI. He actually started wetting himself afterwards. It seemed to clear up after his infection was gone.

 

 

Hi thanks -- my daughter has had this problem for a while and we have checked for UTI before and it has never been that. I'm afraid it is really behavioral/sensory/OCD. But thank you very much for your reply and your input.

[lsad765]

Hi LLM -

 

Thank you for your response. Right now, we are focused on addressing strep with abx (my DD has had lots of strep) and sensory/OCD stuff with some cognitive behavioral techniques.

 

Methylation problems seems like a whole other issue! Could I ask you for your recommendation -- how do I do to educate myself on this? I've read a very little about it and it seems complicated and not well understood. Do you have a doctor or specialist help you with this? Is this something that Dr. T could help with? I guess I'm asking, where do I begin??

 

And should we do the C3d test? Where would I start on that? I'm sure I'm not the first new poster to say that this is feeling a little overwhelming!

 

Thank you in advance for any further input....

[LNN]

This is something I wrote to try to explain how one piece of methylation (and there are many!) plays a role in mental health. Treating this one piece drastically improved my daughter's bipolar-like behaviors. http://www.easytolovebut.com/?s=holy+mthfr&submit=Search

 

It is complicated and few doctors know how to treat. Dr T does do some testing but since he's not my doctor, I'll defer to his patients to comment on their experiences. You can do the C3d test or ask for his thoughts on it. It isn't an "aha" test that will tell you what to treat. But we've found it helpful as a tracking measurement, to confirm that treating with antibiotics was appropriate over a long period of time.

 

If you read the article and want to know more, I can share some links to some videos that are helpful. But they're long and make your head spin. I think many parents are more ready for it once they've gotten over the initial shock of Pandas and feel like they have a handle on the current infection and a good treatment/support plan. Then, as things settle, your mind has a little more room for methylation. But I tried to make the article a place where you could see why it was worth looking into. Sheila - the owner of this forum - is also working on making additional methylation articles available shortly.

[WorriedDADNMOM]

I also concur this is the same with my dd8 who had tic after strep. Seems as if everything were very weird. My dd would put tp in her underwear since it was wet after using bathroom. I have heard Dr T say in a video about ASD and girls with this "sensory" issue. For us, de-bulking infections with abx then DAN protocol has worked well for us. Some use DAN some traditional steroids and such-----kinda preference. The fact of getting a Pedi to actually do something is a start. Good luck and if you need any questions answered, PM us.

[T_Anna]

My DS also had this where he thought he had wet the bed and was dry. We also checked for UTI.

 

T.Anna